New About Me

Feeling so good I think it’s time for a new About Me page! So… I had a hideously tough year in 2018. I spent about two months thinking I had muscular dystrophy and was dying, but it turned out I only had the super-rare autoimmune disorder dermatomyositis, which still sucked a lot. Basically my immune system […]

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Feeling betterish

So two months into the prednisone and I’ve built up enough muscle that a lot of things are finally starting to feel almost normal, like showering and washing dishes and walking to the beach. Which is great! It’s really and truly a wonderful feeling to be able to lift things without strain (not the cat […]

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Being zen and feeling better

I’m amazed at what a patient person I’ve actually turned out to be. I’ve always felt quite impatient when I couldn’t do something easily, or had to learn something new that took a while; I like doing things that can be done quickly and I like learning things that can be learned quickly. This whole […]

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Getting a muscle biopsy

One of the more surreal episodes in this strange adventure was going to the hospital in Iowa City to get a muscle biopsy. This turned  out to take place in a full, television-style operating room in the neurosurgery department no less! We were there for 11 hours. I’d read online that a muscle biopsy was […]

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Things dermatomyositis has made hard

This has been absolutely excruciating. I know there are more painful autoimmune disorders out there (this has not been painful at all really) but it’s really impossible to convey just how awful it is to experience your body getting weaker and weaker, your muscles smaller and smaller, and your capabilities less and less, and be […]

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I took my stitches out myself

What a strange but oddly satisfying experience to cut and then to pull little plastic strings out from under your skin… I’m glad they are gone: they were bunching up the skin strangely and it’s nice to more comfortably lie on my left side again. Cocoa butter to smooth out any scarring! Soon will forget […]

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Legs feeling better…

Such  relief to wake up this morning with almost no tightness or strange streaming sensation in the muscles in the tops of my thighs. Wouldn’t it be nice if the prednisone were really working and changes were happening? Some concern that it has to do with supplements that I started taking again because they brought […]

Read More Legs feeling better…